New York No 1 - We Made It There (But It Wasn't Easy)

 

They say if you can make it there, you'll make it anywhere. I won't say New York beat me, but I did start to feel a little like Jack Lemmon in The Out-of-Towners. I was running around in the rain with a soggy piece of paper, writing down everyone's name so I could complain effectively. As I wrote to my mum after 24 hours I was half expecting to end up sleeping under a tree in Central Park and having my shoes stolen in the middle of the night by a man in a cape.

 

I put the pictures of my New York trip on Facebook and enjoyed all of the comments from friends and family, hoping I’d enjoyed my trip and telling me how well I look. We had a great time, me and my fellow MS partner in crime. I dubbed her the Ginger Mare after seeing it on the side of a horse lorry and she called me the Clumsy Pike Hound when I broke my fingers a couple of weeks ago. The trip was amazing and I saw so many things I thought I’d only see in films. The photos tell a story of museum visits, walks in Central Park, visiting a show and eating in great restaurants with plenty of cocktails, but these pictures don’t tell the whole story.

In general the picture of ourselves we present on Facebook is at worst a fabrication and at best a little bit of an edit. I react badly to people who use Facebook as a vent for all their complaints and misery, but maybe those people are just more honest. When they feel like shit they say it, but I rarely do. The most honest New York pictures on there are the ones where my friend shows off her blistered feet from walking on the insides of her heels, which she does to keep her balance. Incidentally I keep my balance from walking on the outsides which plays havoc with my knee and hip joints but you wouldn’t know that from a picture.

MS likes to remind you it exists from time to time. In April I had a sudden relapse where I suddenly fell asleep on the couch and became like a drained battery. I was vaguely aware people were there but they were distant and I couldn’t fully open my eyes to see them. I remember a doctor arriving and lifting my eyelids; I was aware he was there, but couldn’t focus on his features or reply to his questions. Once he dropped my lids again I had no ability to keep them open. I heard the ambulance man say that my pupils were not responding to light and I guessed that must be pretty serious. Gradually over the next few days the overwhelming fatigue lifted and as the IV steroids went in I began to see more clearly. It took a full week for me to return from hospital and longer to be able to stand and walk. This was a big relapse, as opposed to the little ones I was used to having from time to time. It was not surprising considering all the personal upheaval I was going through. I began to think that attempting all this training, alongside the divorce and house move was hard enough without throwing a trip to New York into the bargain. I expected to move in June and have a while to settle before going away but as it was there was only a fortnight before I was off on my travels.

Cancelling the holiday or at least postponing it would have been the sensible option, but this trip stood out to me like a beacon in a wasteland. If I let it go, I felt without something to aim for or look forward to. Just a summer getting the house straight and catching up on college reading. I felt it would be a definitive break from the norm. Having moved into a village that is literally a dead end means I have all the peace and quiet I could crave, so more of the same would not feel like a holiday. I needed to do something bold that would be the highlight of my summer and be my fortieth birthday treat to myself. It was a complete contrast to my ordinary day to day life.

In New York the noise starts early. I think I heard the first car horn at around 7am and then it continued all through the day, at varying decibels. There seems to be an unspoken code in the use of the car horn that was lost on me. Even police cars and ambulances don’t stick to one type of siren but alternate between them wildly. Added to that is the roar and rumble of the subway, planes overhead and the constant traffic. Then there is the shouting. I have never seen or heard so much shouting in public places. The smallest infraction seems to illicit hand signals and at one point a very audible ‘fuck you’ when bumped into by a jogger running across the pedestrian walkway. Everyone does everything on the run – people sleep in the park, on the steps of the public library and people make phone calls while walking and running between meetings and they often also descend into insults and shouting! It is exhilarating, refreshing and full of inspiration. People in New York simply do not notice you because you don’t exist. In the park there were people randomly doing yoga and tai chi by themselves and no one cared. There were women doing a boot camp training programme right next to a man painting the lake in front of him. I remember Billy Connolly once doing a routine about speed walkers and how ridiculous they look; he claimed it would never have originated in Glasgow where if someone were walking like that in the street they would soon be followed by a line of kids, shouting, pointing and taking the piss. It felt a little like that – there were people seriously doing things in public that would have been ridiculed here. Instead of finding that a charming English idiosyncrasy that keeps us all grounded, the thought made me a little sad. I felt an acceptance and tolerance there that I’d never seen in England. It could have just been the experience of being outside my own world and on holiday, but I didn’t feel like anyone gave a damn what I was doing – whether I walked with a stick or not, or whether I was dressed a bit weird (I do like to do that occasionally).

In some ways I guess it was the archetypal New York holiday, with lots of eating, drinking cocktails, going shopping and visiting the tourist attractions. On paper it looks like a huge adventure where we saw all the sights, met some interesting people, saw a great show and ate a lot, but the toll it took on my MS was invisible as usual. It was a feast for the eyes and the soul, but disturbed the body quite a lot. The arrival did not bode well when we were told we had no booking at the hotel we'd chosen; apparently we booked for 2014 not 2013. They let us have a room/cupboard for the night but neither of us slept well worrying about how we would handle finding a new hotel and organising our baggage the next day. Luckily for us it was the hotel's mistake not ours, so we were moved to a nicer hotel, with a balcony room and free wine and chocolates. Incidentally this story was a great one to tell in restaurants and delis because people were so appalled they generally offered us something free! We didn't use the advantage; well, not much anyway! The heat was unbelievable, thankfully we missed the temperatures close to 100F but we did see temperatures in the high eighties and this plays havoc with the nervous system. My fatigue was awful, leg spasm and pain increased and I would get sudden bouts of feeling like my chest was being squeezed (the MS hug apparently - didn't feel very friendly). To pace ourselves we would have a late breakfast and enjoy the hotel's air conditioning. Then we would venture to do one thing per day, or maybe two with a good rest break. We took our breaks under trees in Central Park or Madison Square Park. We drank plenty of water and even returned to the hotel for a lie down when necessary. Holidays with MS do require plenty of money - we needed to take cabs for longer distances, because the subway is not the most accessible system and buses were like ovens on wheels. I was very aware that I had started to take more painkillers and that each night I was fast asleep as soon as my head hit the pillow.

These are the things people don't see and having to explain the problem was a daily occurrence. I became a very haughty woman at the Empire State Building when we were sold expensive tickets we could not use because of our disability. 'Forgive me ma'am,' the manager said ' but I would not have known you had MS'. It seems that the image of someone in a wheelchair persists as the visible representation of our disease. Explaining why we couldn't stand in lines for long periods was difficult and we had to keep flashing our disabled railcards to show we were genuine. Luckily my friend's physiotherapist was well aware of this issue with MS patients and advised us to take a crutch instead of a folding stick because it was a better 'visual cue'. She was right. The crutch got us through the airports in VIP style and more room on the plane for free. It seems crazy I have to carry something I don't necessarily need to get the help I require, but actually it was easier than long winded explanations and constant misunderstandings. Our weirdest encounter was at the airport coming home where the lady checking us in with Virgin Atlantic said 'what have you done?' when looking at my crutch. 'I haven't done anything, I use it from time to time because I have MS', I replied. 'How long for?' she asked. 'Fifteen years' I said, looking at my friend for confirmation. The woman pulled a face as if this was the most terrible fate she could think of. 'I'm so sorry' she said to my friend. So we gave her our stock reply 'Don't apologise; you didn't give us it'. She seemed confused by this and very distressed by our situation and we were very glad to be transferred then to a more upbeat rep who gave us free extra leg room and didn't bat an eyelid about two ladies with matching crutches.

This confusion seemed to bleed into a lot of the interactions we had over there. Our missing room booking was stressful and inconvenient, but the next day sat reading on our balcony we were able to forget the inconvenience and feel we'd landed on our feet. When my friend's iPhone was stolen in the public library the hotel staff seemed to feel it was a disaster they were personally responsible for. We told them, 'it is what it is' and once the insurance and reporting was sorted out we put it behind us and went to the museum followed by a lovely dinner at the Russian Tea Room. These problems were not tragedies; they were just some of life's little glitches and inconveniences. Letting one or two experiences overshadow the whole holiday would have been wasteful and self-defeating. We got through it okay and although I will be paying for my adventures in fatigue for the next week or so, it was all worth it.

 

A Resting Place

So I am here. After many months of wrangling, worrying and wondering if it would ever happen I have finally moved house. The last three and a half months have been nothing but activity – from the basic but gargantuan task of packing up a four bedroom house, to the endless legal appointments, and the downsizing. I have held sales, sold things on ebay and given away whatever was left to friends and charity.

Moving in was equally exciting, physically exhausting but positive. I could go and buy a new kettle or choose pictures for the walls. I laid awake some nights full of equal parts excitement and worry – one minute I would imagine the deal falling through at the last minute and the next I would think of where I would put my writing bureau. I didn’t have a full night’s sleep in the final week and the worry stopped me doing the basic things that help me stay balanced physically and mentally. I simply didn’t have time to walk the dog, or eat properly or get my prescription in on time. There were nights I went without the right tablets so popped up like an excited meerkat at 3am. Other nights I couldn’t get to sleep till I took diazepam and then felt groggy and out of touch all the next morning. Every nerve in my body was on tenterhooks and I kept saying to myself ‘when I get in the new house..’ after listing everything I needed to do better. I was hard on myself of course because I always am. Really I was only doing my best.

Then I got here and it was like a weight lifted from my shoulders. Of course lack of sleep and over excitement meant I broke my fingers dropping a picture in the first ten minutes I was there. It is quiet here. Not literally as quiet as my old house where I had no neighbours but there is a tangible calm. It is like going to Cornwall where the pace of life seems slower. Coming home is like going on holiday. It has changed some of my habits too. Instead of switching on TV at any old time and watching any rubbish that’s on, I think more about what I want to watch and only switch it on then. I listen to more radio and music, because I am cosier and in a much smaller house so a CD on in the sitting room is easily heard when I’m in the bath. I didn’t put a TV in my bedroom and I have internet access upstairs so when I am watching TV I really watch it, instead of watching with one eye and playing Bejewelled Blitz with the other. I think I have been working on overload for so long it was no wonder I recently relapsed in the spectacular way I did. Yes, sometimes these things just happen, but other times it is easy to see where I have made life difficult for myself. This time the divorce, the house move and all of those things were unavoidable, but the way I dealt with them wasn’t always helping. It is often easier to overload the brain with technology and sound rather than listen to your thoughts. It is hard to motivate yourself to cook good healthy meals for one or to get up and exercise every day.

I am hoping the quiet and shelter of my new home will be beneficial to me physically and mentally. It will give me the space to get over the changes in my life, but also foster a new way of living my life. Just so my friends don’t think I’m getting too zen and out of character I am having the excitement of New York City for a week’s holiday. Well, you can’t be quiet all the time can you?

Letting Go With Grace

Letting Go Of Things Not Meant For You

Today on Facebook I saw a great quote from Buddha about the three things that matter most in life and it fit into some things I’d been thinking about. It instantly moves you beyond the petty day to day struggles of life and the things you want for yourself, towards a more simple way of living. It matters only how much you love, how gently you live and (the one that clearly resonated with me) how gracefully you let go of things not meant for you.

It has been almost a year since my marriage broke up and I am now divorced. I have moved and am now settling into my new home and getting used to living alone – well as alone as you can feel with two cats, a dog and a tortoise. I have started to like my own company and look forward to getting home and creating my own space. This has been the longest period of living alone I have had in my whole life, maybe because I never gave myself chance to get used to it before and learn to value the quiet. I now have a craving for the peace of mind only silence can bring and often sit reading in the quiet, with no internet, no TV and no radio. The only sounds come from outside and there is the constant gentle sound of the bamboo wind chime or when really windy the Tibetan bell that hangs in the garden. I always needed sound before, perhaps to reassure myself that someone was out there, but now I don’t need that noise to feel comfortable.

Moving in to a quiet village with a meditation garden next door has also made me aware that I only follow one of Buddha’s edicts. I do love a great deal and never seem to be able to curb this side of my nature, even where it might seem against my best interest. I have taken huge risks in life in the name of love and sometimes they have paid off. Other times this ability to love has led me down difficult paths and into rash decisions. This is where Buddha’s other edicts come into effect.

I realised I don’t live gently. A new neighbour mentioned how the meditation garden seemed to have a gentling effect on the whole village, but I have had to start thinking about how I affect the garden. During moving in I have been a little like a bull in a china shop! On the first day, in a state of over-excitement, I tried to put up a huge print I’d had framed over the bath. There had been two nails already put into the wall and instead of checking them I rushed straight into hanging the print, when the nail snapped and my finger got trapped between the bathroom taps and the frame. I saved the enamel taps but definitely did not save my finger and spent the day in A and E. A few days later I banged the same finger, pulling bubble wrap off a picture and flinging my arm against a book case. I had legs covered in bruises from banging around and over working and then I shut my fingers in the dustbin as I put the lid down. I swore, loudly and was then horrified as I realised I was just over the hedge from people trying to meditate. No amount of concentration or mindfulness could have blanked out the bang I just made or the loud exclamation of ‘buggery bollocks’ that followed. I realised I was rushing into everything and getting completely exhausted and over-stressed, and for no good reason. It made me aware that I was living loudly, rashly and stressfully, not gently at all.

Yet, it was the third statement that really spoke to me; gracefully letting go of things not meant for me. It has been very hard for me to learn to let go in life. I hold onto things and internalise them. I have been surprised when living quietly in my own space, how much my thoughts have ranged through recent losses of my marriage, the home I’d lived in for 3 years, my friend and at Christmas my cat. The thoughts also ranged over past losses too; the miscarriages of my three children and breakdown of my first marriage, the loss of my second husband Jez six years ago and many other long term losses that maybe I hadn’t had the private space or quiet to deal with fully. Also being alone, by its very nature reminds me of those other times I was alone and brings up old memories. I also had to face the fact that I have now been married three times, which for reasons to do with my own moral code and my religious upbringing, makes me feel quite ashamed. I find myself embarrassed about saying it to people and never imagined myself being the person who is multiply married. Despite becoming a widow after my second marriage, clearly just one of those things that happen in life, I have to face the fact that I have made bad choices and wonder why that happened.  It is not possible for me to leave this issue unexamined, because I truly believe if you don’t analyse and work something out, you are bound to repeat those mistakes or patterns.

Not recognising things not meant for me has been a pattern in my life. A friend once said to me ‘every one can’t be THE one’ and I know rationally that’s right, but as a person of the age where I don’t want to date just for the sake of dating, I have never bothered starting with someone unless I felt it had potential. Spending time dating people who I have never met before seems like a terrible waste of my time – I’d rather be at a good film or play, or read a good book. I don’t believe in the no sex before marriage rule I’d grown up with, but think somewhere along the way I decided to invert the advice; instead of not having sex until I was married, I decided to marry everyone I had sex with!! With both my failed relationships there were red flags clear to all except me and only now I can see them, with hindsight. The problem is I couldn’t let go of these things. I kept working at it because I was determined that it would work, because so much of my love had gone into it. I also worked hard on myself because I am stubborn and don’t like something to beat me, but also because I always assumed it was my fault. Now I know it isn’t always my fault, but then what follows is a difficult realisation; if I continue to let someone treat me badly, and also go ahead and marry them or stay married to them, I do become partly to blame.

I have to start recognising those things that are not for me; things that might damage me or make me unhappy in the long term. This is a learning process but I understand that this letting go can take two forms; letting go completely of things that are harmful, but also letting go of the hurt, the blame, the anger and the guilt. To truly let go with grace instead of having to be dragged out kicking and screaming at everyone in my path. I am starting to recognise what is not good for me and what my boundaries are and I am starting to learn more forgiveness too. I am not entering into any sort of dating game, but it is learning to take forward and develop as I meet new people throughout my new life. Wish me luck.

World MS Day

I just dropped in on Facebook and saw World MS Day and the post asked me how I was spreading awareness. I stopped and thought for a moment; what would be the best way of making someone understand what it's like to have multiple sclerosis? Today this is especially pertinent because I have just picked up my brand new Motability car. To the outside observer I guess I look like a lucky woman; I have a lovely house (half packed up for moving, but still), I don't have to get up every morning for work, I seem to have disposable income and now I have a brand new car!! Couldn't be better?
When you 'get' a disability, everyone assumes you get everything for free. People assume you are given items like wheelchairs, or houses even. I have had people refer to me as lucky because I can have a new car when they can't afford one. I have often replied 'you have the disability and you can have the car', that soon stops them in their tracks. Let me tell you how I got my disability.
One day I was driving to my job at the Scunthorpe Evening Telegraph where I worked full time as an advertising representative. I was 22, fit and active and had only had the odd period of illness over the years. I was just coming over the brow of a hill when I had to pull up in an emergency stop. A car had run into the back of the car turning right just ahead and I had just avoided joining the shunt. I felt my neck snap back and forth. I drove round the crash, making sure the police were called, and carried on to work. Yet, as the day went on my neck started to stiffen and ache, it was swelling at the base of my neck and I started to struggle to move my head. I drove home and took some painkillers and assumed I had whiplash.
The weekend progressed and I started to feel 'odd'. I couldn't feel the outside of my left arm or my little finger on my left hand. I had a strange buzzing sensation down my leg. As Monday came I thought I'd better get checked out by my GP and I rang for an emergency appointment. By this time I couldn't feel the left side of my face properly and I seemed to be dragging my left leg. I was taken from the surgery immediately to hospital. I think he suspected a stroke, but also had experience in neurology and I now appreciate his urgency in getting me there. They immediately started MRI scans, CT scans and nerve conduction tests. Then followed a horrific lumbar puncture, which went wrong and left me unable to even lift my head without being sick. This lasted two weeks and I was given steroids several times over those months, drifting into work when I could and staying at home when I couldn't.
It was later, at a routine GP appointment, that the truth finally dawned. He looked at me and said 'you do know what they think you have?' I shook my head, because no one had said. It hadn't been pointed out to me and at one point I think a doctor thought about telling me, even taking me and my family into his office for a serious chat and then not revealing anything. The GP told me they suspected MS. I was so shocked it didn't sink in. I imagined the MS society posters of a spine ripped out of the page and I wondered if that would happen to me? I had no idea how the disease even worked. I was relieved it wasn't a brain tumour because at least that meant I would live, but how would life be with this new disease. A couple of weeks later the specialist conformed relapsing - remitting MS. I would probably not deteriorate, but would be ill from time to time. I remember some of the cliché's used like 'live a relatively normal life' and 'live an ordinary lifespan', but it was almost as if nothing was sinking into my brain. I was numb.
I remember sitting in the corridor afterwards, watching people pass back and forth and wondering if this was real? It was almost as surreal as Alice in Wonderland falling down the rabbit hole and finding a whole other world where she is sometimes too big and sometimes too small, never quite fits and is always under threat from something just out of sight. I was now in the new world of the 'disabled' and I didn't know how to fit in my world or with my friends any more. People treat you differently when you're ill. They might stop seeing you altogether because they don't know what to say, or treat you with kid gloves because they think you might break, or not mix you with their other friends because now you are 'other' and you don't belong with them. Maybe this was something I felt rather than something deliberate, but it was there all the same.
It took an MS Therapy Centre to educate me about my results and what MS was. I had a lesion on my brain causing inflammation. The myelin sheath protecting my nerves had become damaged and my nerve messages were scrambled. I found this in all sorts of different ways - some days I couldn't walk at all and crawled around the house, sometimes I could walk but stumbled or fell into furniture because my legs wouldn't do what my brain was saying, I would go to pick up a teapot and sometimes my hand simply wouldn't lift it whereas other times my hand would shudder with an intention tremor where I would go to pick it up several times and knock it all over the place.
I started to feel better with steroids and get the help I needed with occupational therapy, physiotherapy, and rehabilitation services.
I manage my MS well now and I have maybe two relapses a year. That may seem mild, but if I tell you that my most recent relapse made me unable to open my eyelids and that should give you some idea of the severity of symptoms. I always have steroids and improve, but in between I still have left sided weakness, right sided wear and tear in my joints because they are struggling to compensate for the left, and I have crippling pain and fatigue every day of my life. I take up to 12 tablets a day to manage my MS and my pain syndrome and there are some days where I am on top of the world and others when I can't move from my bed. Yes, it is mild when compared to my husband Jez who died from breathing difficulties and pneumonia because of his MS 6 years ago, but it is severe compared to the active and fit 21 year old I was. On an emotional level there is a huge toll - I have lost relationships, work and study opportunities, any idea of having children (I have Hughes Syndrome too) and my security. I literally have no idea what tomorrow might bring.
When I picked up my beautiful new car this afternoon I started to drive it away and immediately tears welled up and I became emotional. The voice in my head was saying 'you don't deserve this' and I realised how bad the last few years have been. The Motability scheme I have decided to use means I pay my benefits to the scheme so I can lease a new car, with insurance, tax and RAC cover. It means I have security, but I pay for it, and have just signed over £1800 as a deposit, of my own money. This was not freely given. I have just been in a relationship though where my disability was used against me. Where the person who loved me most told me that it wasn't real, that my difficulties were my own fault, and why did I deserve a brand new car? What made me so special?
What I want to say on this day of awareness is that it is hard to live with MS. Anything we seem to be given is hard won, worked for, and often given begrudgingly. We are disbelieved, disliked because we are seen as a drain on resources and often ignored by the medical community because we can't be cured. Living with MS is hard because it takes away the life you thought you would have and replaces it with something uncertain, shaky and frightening. The best way to understand what it is like to have MS is to listen, yes there is a 'test book' case and medical books you can read, but the best way is to simply try to understand the person in front of you and believing what they tell you. Meanwhile, I am going to try and enjoy my new car!

Letting Go

My last post was about haunting and how difficult it can be to let go of those we love. Although I am still experiencing the anniversary of Jez's death my more immediate problems just do not go away and I find myself having to let go of more stuff.
Despite still haggling over this and that and worrying over the usual hitches of any house buying and selling, this was the weekend I chose to clear out my stuff. I am downsizing quite spectacularly from a four bedroom/four bathroom house to a small two bedroom barn conversion. I am using the excitement of my beautiful new bijoux residence to get over leaving behind this house. It isn't that I love the house really, in fact I never really wanted it. My ex-husband fell in love with the place and I could see a future where we could really build a life together. We moved in at this time of year 4 years ago. It was at it's best, with a garden lush and green, trees full of apple blossom, and bluebells everywhere. This morning I stepped onto the verandah and smelled the warm lilac as soon as I opened the patio door. It is a sickly, sweet perfume that forever reminds me of the opening of Oscar Wilde's Dorian Gray. As beautiful as it was to move in at this time of year; it has made it even harder to leave.
I had hoped to leave in winter with the grey dark nights, the isolation where after 5pm dark falls and it feels like no one else exists. I have struggled to carry in logs and sticks and clean out fires. I also struggled to afford to keep the oil central heating running by myself. It is dirty up here in the winter, cold and muddy and unwelcoming. Yet, as soon as spring arrives you forget all that and enjoy having the doors open in the evenings, the smells of the outdoors, watching bats as twilight approaches and the woodpeckers on the lawn teaching their offspring to find ants.

A skip came on Friday morning and I started to fill it slowly with help from family, we cleared the attic cupboards, the potting shed and Dad cleared the garage as only Dad could. It felt good and cathartic. I was setting up a yard sale, but rain forced us inside. I couldn't believe the amount of stuff I had and good stuff too. We filled the dining room and living room, then branched into the garage with larger furniture and people started to arrive. There was excitement at making some money - I had set the aim of making enough for a rug for the living room and paying to have some posters framed for the new house. So I went into the day thinking about those things and seemed to be okay with it. As friends wrapped people's purchases and I kept taking the money it felt good.
As the day moved on though it felt strange. I didn't mind letting go of stuff, because after all they're only things. Others who came in and seemed more upset at what I was letting go of than I did.
Stuff is just that though; stuff. Books are just books, although sometimes it might seem like they contain your friends, they don't. My real friends were living, breathing people in the here and now cooking sausages and making a jug of Pimms. Ornaments and china are not testament to a life. The life you have is measured by your friends and the people you have influenced and left an impression on. For me this is an even more difficult lesson because I can't have children so I don't have actual mini-me's running around continuing my DNA. Those that remember me, will have to remember me for other reasons; maybe I taught them something, or made them laugh or helped them understand their life in some way.
I have gone through a lot of loss in life, so am constantly learning to let go of stuff. The last six months has been worse than most. My marriage broke down in September, the same weekend my friend Kathryn died, then the divorce and house sale process started and at Christmas my cat died. Its such a huge list its almost comical. Now, as I hopefully near the end of the house sale and get my decree nisi, I am facing a different loss. I walked round my orchard last night in the early evening and was sad at the loss of hopes. We had walked round this orchard just before we got married and talked about what we wanted to do here. Probably a rather naïve view of making jam, growing vegetables, having chickens and doing up the house. The jam making happened and I grew a few vegetables but that dream of working together here as a team never happened. This was my responsibility, the place where I fell in love with an idea of what I thought my marriage would be like. Perhaps, if I'm really honest, I didn't fall in love with the real person there with me, but the person we discussed as we bought this house. I expected too much, that just by loving and marrying someone, they would want to change - to enjoy things they'd never really enjoyed before or that they would learn to love the things about me they didn't understand such as my experience of loss or my illness. I experienced sadness for both of us and that shared future that never happened and became something so entirely different we couldn't bear to live in it anymore.
Letting go off the stuff is easy. It is letting go of the dream that is hard. Also now, I have to face new starts. A new home and new neighbours. New traditions and making new friends. So I am letting go, even though I'm scared. I have to learn to love people as they are, not how they might be some day. Some days I feel there are so many things I have done wrong in life I find it hard to trust myself. So I inch forward slowly, letting go of what I don't need, hanging on for dear life to those who make me happy and embracing all the new things life throws at me. Wish me luck.

Haunting

Haunting

When people write about or depict a haunting in any way it is always visual. A creepy build-up of sounds and events that eventually reveal a malevolent spirit wreaking havoc on all those it haunts. Others depict sad, faint ghosts or apparitions like a sepia photograph that has somehow been left behind in the air. I don’t believe in ghosts, but I do believe in haunting. I always thought that maybe ghosts were a feeling left behind where something tragic had happened or a faint outline of someone who still longs to be here. Yet the haunting is nothing to do with a ghost wanting to stay with us; it’s us who want the person to remain.

In May every year I experience a haunting of sorts. Just as spring is really starting to burst into bloom and there are lilacs and bluebells a grey mood slowly envelops me and leaves me feeling a faint sadness all the time. It lingers behind me like an unwanted tail. Following me from room to room and place to place until it becomes part of me. There are days when I am happy and time with friends is fun and I can enjoy life, but behind it all there is a sense that a part of me is missing and no matter how hard I look I can’t find it.

Jez was my second husband and once we get beyond that Henry VIII statement, I can tell you that he died on 24^th May 2007, which seems like a decade ago but also feels like yesterday. They tell you grief comes in stages but all the books are wrong. Grief comes in waves; small waves that just lap over your toes when you didn’t expect it or great big crashing waves that overwhelm you and knock you off your feet. It doesn’t matter how long ago Jez died, there are times, especially in May, when it still feels like yesterday. The day at 5am when his breathing stopped and an outwardly silent scream ricocheted round my brain obliterating every other thought. I sat on a grass bank outside the hospital and I rang New Zealand to tell his family they had lost an uncle, a son and a brother.

What did I lose? I lost the only thing that had ever kept me upright in this world. My solace, my own stand-up comedian, my cheeky sod with the most charming smile I had ever seen that let him get away with murder. Jez was my dream and my nightmare all rolled into one. As soon as I met him it was a done deal. I probably fell in love with his photograph. He was intrepid, daring, and had some of the most ridiculous impossible ideas I have ever heard – such as skiing on some sort of snowboard/wheelchair hybrid that was never happening on my watch! He was the most romantic man I had ever met in life. Before me he had been ‘a bit of a bugger’ but once he met me he was loyal and the romance never died even after we married (8 weeks after we met).He bought me jewellery, flowers (just because), chocolates, and on one trip to Washington even made his dad take him on a mortifying trip to Victoria’s Secret. The last year we celebrated our wedding anniversary he bought me an engagement ring because I’d never had one and put flowers in every room of the house. I did not know men like this existed.

Jez doing something typically swashbuckling

Yet, even as I had him he was slipping away from me. As the MS worsened its grip and he burned himself trying to make a cup of tea, and lost the use of one of his arms, then needed homecare and then the MS reached his brain stem and he struggled to breathe and couldn’t eat and couldn’t swallow. The last night he spent in our home, my friend and I were eating a take away and his breathing got worse. Even as I rang the ambulance I had no idea that this was it – he was leaving. I walked back into the bedroom and noticed amongst the unravelled wires and equipment a human shaped void where my husband had been. It took more than 3 months for him to die as he stopped being able to eat and infection after infection sapped his strength and he made the decision that enough was enough. I sat and I waited through the night, with my brother sleeping beside me in two chairs and me on the bed trying not to lie on whichever pipe was running in or running out. I wasn’t scared of death. I was scared of who I would be afterwards. With him I made sense. I understood who I was. He had become my purpose and my only reason for breathing and what would be left when he was gone. Nothing it turned out. Nothing but admin and planning and the never-ending silent scream that made me kick things and hurl a phone at the wall and the only thing I could hear in my head over and over again was ‘I want him back, I want him back, I want him back.

In May every year, the scream comes back. It starts with the slow creeping mood and becomes that deep sorrow that accompanies the knowledge that they are gone and you will never see them again. Haunting is not seeing something scary and unexpected. Haunting is hearing something on the radio and knowing Jez would have laughed at that, then turning and remembering he’s not there. Haunting is having a problem that no matter who you talk to you can’t solve because the only person who knows how to solve it and soothe you is not here. Haunting is waking up in the morning alone without that big arm pulling you in for a giant cuddle.  Haunting is not someone you don’t want hanging around you; it is the absence of the one person who could make everything ok with a grin and a little raise of the eyebrow. There is nobody to roll their eyes at me. Nobody to call me the bear of little brain. Nobody to look at me like I was the only woman in the world. Nobody to be my home and the place I return when it’s all gone wrong and I want a good cry or when the most exciting thing ever has happened and you know exactly who to tell first. He is not even in the next room. He is simply not there.

In a book Jez leant to me there was a love letter and it says everything I need to say about living without him and being haunted by him better and more poetically than I ever can:

‘you ask me what I fear most. You know already or you would not ask. It is the loss of the reader, the man for whom I write. My greatest fear is that someday, suddenly, I will lose you. We never see one another and we never speak directly, yet through the writing our intimacy is complete. My relationship with you is intense, because it is addressed every day, through all my working hours. I sit down, wrapped in my blanket, my papers incoherent on the table before me. I clear a space to write, for you, to you, against you. You are the measure of my abilities. I reach for your exactitude and your ambition, your folly. You are the tide mark on the bridge, the level to reach. You are the face who always avoids my glance, the man who is just leaving the bar. I search for you through the spirals of all my sentences. I throw out whole pages of writing because I cannot find you in them. I search for you in all the small details, in the shape of my verbs, in the quality of my phrases[..]I repent nothing but the frustration of being unable to reach you. You are the glove that I find on the floor, the daily challenge I take up. You are the reader for whom I write. You have never asked me who I have loved most. You know already and that is why you have never asked. I have always loved you’.

Hallucinating Foucault by Patricia Duncker

 

Lilacs and Peonies

Its been a long time since I've had chance to write a blog. With a divorce and a house move underway, I've also had to change my name and change my will and at times I've forgotten which solicitor is dealing with which problem! So far we're in the final stages - the divorce is signed and sitting and waiting for the court to complete it. My name has changed back to my maiden name and I am currently trying to make all the different agencies aware of this - with varying degrees of success. My will is changed and I now know that should anything happen to me my brother will be looked after. The house sale is in its final stages and I am half packed, half not and waiting for that ever elusive completion date. I am also coming towards the end of my academic year - last pieces of work due, last presentations and all of a sudden everything seemed to be rushing towards a conclusion and I couldn't see how I was going to get from here to there. The amount of work and the amount of time to do it in just doesn't seem to compute!

Then a couple of Fridays ago I decided to add MS to the mix. I had been bumbling along in my own inimitable fashion and had even managed to add in the odd week away with friends in an avoidance of the hard work to come. As friends will tell you, I am not very good at learning the obvious - the only way to the other side is through.
I had been into hospital on the Wednesday for a phenytoin infusion. I have one every 12 weeks to make a difference to my pain levels. The normal routine is to go in and have an afternoon hooked up to a drip with saline and phenytoin where I read and then fall asleep as the drug makes itself felt. It can vary from treatment to treatment. Sometimes I barely notice it going in, can talk to others, read a book and be fully coherent till I get home. I go to bed a bit earlier and then wake up the next day as good as new. Other times it can be painful going in. The drug can feel cold as it goes into the vein and then create a huge ache that runs up the vein and into the shoulder and then up the side of the face. Mostly its bearable and only lasts about an hour, other times its extremely painful and I have to ask for breaks and for it to slow down. This particular Wednesday the doctor remarked on how small the vein was and decided to run it slower than normal. It was still painful and we had the slow the drip down several times until I was comfortable. I felt very sleepy and came home, had the munchies and waited for my friend M to arrive and watch me for 24 hours. I got through Thursday quite well but still felt stoned. I was telling people very indiscreet stories and had to be driven to go out for a family meal because my pupils were so big they were take over my whole eyes!
Then on Friday things very suddenly got worse. I had been bright and breezy in the morning, even managing a little packing. Then in the afternoon I seemed to hit a wall of fatigue. I remember sitting in the couch with a cuppa and seemed sleepy. Then I realised someone was shouting my name but I couldn't seem to respond. It was like I'd forgotten how to speak and I kept trying to open my eyes but my eyelids felt like lead. Ie simply could not respond. I remember a strange doctor coming in and shining a light in my eyes but again seemed stuck somewhere inside myself. Then an ambulance came and nothing they did seemed to make me respond. I don't know where I was, but I wasn't in the room!
This lasted for 3 days. I could not stop sleeping. Even sitting up to eat seemed an effort and all I could imagine every time I tried to sit up was lying down and shutting my eyes. My doctors decided the only way to bring me back was with steroids. It wasn't until 5 days later that I could fully open my eyes and see one person instead of 3. It was scary. I still slept between every meal and started to walk but on two crutches. The stiffness and pain in my neck started again and diazepam was the only drug that seemed to leave me comfortable. It took a full week in hospital before I could come home. Today is my first day I have been alone overnight and into the morning. I am unsteady on my feet and between a half hour of activity I can only lay down and sleep again. It is such an improvement in such a short space of time, but one hell of a wake up call for me on what my body needs.
How do learn to live a life like this? This morning I realised that there is an analogy, as usual in nature. My favourite flowers are lilacs and peonies. I have a lilac bush in the garden and this morning I could not resist using the time I was upright to snip a few stems and put them in a jug where I can enjoy them in the house. I have always liked to have lilac and peonies in any garden I have had and people have said to me 'what's the point; all that work and they only flower for two weeks of the year'. Yet, surely that's the point. I look forward to lilac and peony season every year. I don't grow peonies here but make sure that while they're in season I buy myself at least one bunch to enjoy. They feed my soul.
My life is like this. It may seem stuffed full of the awful paperwork and emotional heartache of the breakdown of my marriage and the bittersweet decision that I can no longer afford or look after this beautiful house. At the moment I am really going through it, but sometimes in life it is peony and lilac season and those few weeks of bliss are worth waiting for.